No Feeling of Falling

Thursday, May 26, 2005

Two Weeks

It's been two weeks since my last chemo. Chemo was every two weeks, of course, and so usually I would have spent last night Not Thinking About Chemo Tomorrow. It feels wonderful and weird not to have it looming there.

Lingering after effects of chemo that will take a long time to go away: I hate popsicles. When I was getting chemo drugs, I had to eat something cold. It reduces blood circulation in the mouth and reduces the likelihood of mouth sores. At first I would do popsicles or lemon ice. But the chemo also makes me feel sick. So I've come to associate them with nausea.

I don't really much care except that Adam LOVES popsicles and buys them when he's home. They're always in the freezer. I finally asked him if he could not eat them in front of me. I don't mind that he has them, and can ignore them, but the sight of them---ick.

On the good side, every time I slipped on my chemo schedule, every day after two weeks I felt almost exponentially better. So by this weekend, I should feel absolutely great. I don't think I really know what it means to feel good anymore (I think I feel pretty good now, even though I have some mild neuropathy and get tired walking around the block.) I can't imagine what it will feel like to be so much better. I'll wander around like I'm drunk.

Monday, May 23, 2005

What Now?

I seem to have recovered a lot from my breathing problems, but I'm out of shape. I've been eating really oddly.

So now it's time to start my own personal re-hab. My first change is going to be two servings of vegetables and/or fruit with dinner every night. And although I still have some neuropathy, Bob and I can walk since the weather is warm. Humid. I can't wait until I have more hair because my wig makes my head sweat.

Tonight is the first night I'll be able to have dinner with Adam since he got home from school, and I'm thinking I'll grill pears and serve them with a thin slice of prosciutto. Then a grilled steak for Adam, and part of a grilled steak for me an Bob (sliced into strips) with some shrimp. And a vegetable of edamamae and corn. Bob and I have learned that a good lean steak sliced into strips looks more elegant and more filling than a four ounce piece of meat just sitting there on the plate. And Bob has had a craving for shrimp so I'll cook up some of those, too.

I got watermelon for desert. Because it looked so good.

Every day I will try to make some healthy choices. On June 1, my membership with Curves will be re-instated (I had a medical suspension) and I'll start slow and easy on curcuit training.

Next week, after Wiscon, I meet Dr. Schnur and we talk about what comes next. Radiation reduces my risk of relapse by 10% but increases my risk of complications and does not increase my chance of overall survival--if I were to relapse, they would do a stem cell transplant and salvage chemo and after all is said and done, the survival statistics for people like me are the same either way. On the other hand, stem cell transplants are scary--they pump you full of drugs to stimulate white blood cell production until your bones ache like mad, harvest your own cells, then give you a chemo that wipes out your own immune system as well as, with luck, the lymphoma. You're in hospitalized isolation until your immune system comes back. There is about a 50% remission rate with stem cell transplants. So I have to decide which I fear more, relapse or stem cell transplant, and then if 10% is significant enough to worry.

I am leaning towards no radiation. I am thinking it is time to get on.

Home Again, Home Again, Jiggity Jig

Saturday, May 14, 2005

New Mexico Bound

Leaving today for the beautiful Southwest. Won't be back until almost midnight on May 22.

My story is emailed out and copied. I'm part way through critiquing the other stories that people who finished early were able to email out. Walter Jon Williams is making dinner tomorrow night in Taos.

The sky will be that incredible color blue. People will actually talk about writing. I'll make Howard Waldrop a pie.

Do something nice for yourself while I'm gone, because I'll be doing something nice for myself.

I managed to kill about three hours, all told, between shopping and preparing, but it was a very good dinner, light on meat and heavy on vegetables. I’m taking the salad recipe with me to Rio Hondo. Edamama is rich in protein and psuedoestrogens and all sorts of good things.

I triedto convince Bob that the steamed baby beets were actually some exotic Asian vegetable, but he didn't buy it. He did concede that the salad was really tasty.

On Track

It's Tuesday. I'm healthy. Everything looks good for Thursday.

I've heard that the final chemo is anti-climactic. I've also heard that walking out of the office after that final chemo is the best feeling in the world. I've heard that for some people, it's scary to stop chemo. At least with chemo, they're fighting the disease, but afterwards, there's nothing to do but wait and hope for no relapse.

Me, I'm going to be so busy I don't think I'll have time to worry about relapse. I've got too much to do this summer. I've got to work on a novel, go to some workshops, go to a convention (Wiscon). Bob and I are also planning on a summer of healthy eating and walks--I've got rehab in front of me. Recipes to find! The bike trail beckons! I can start going to my writer's groups again, no more fear of large crowds and infectious diseases!

Thursday, May 05, 2005

One Week!

One week left until chemo! And then I'm done with ABVD! I'm back to trying really hard to think of myself as normal and to do normal things. To whit: dinner tonight is salmon on the grill, asparagus, a cucmber and carrot salad called pachadi (tossed with yogurt and indian spices) and rolls. And a champagne mango (Barth! They had them at my grocery!) I don't cook for awhile right after chemo because the chemo schedule is Week 1 nausea, Week 2 neuropathy. (Week 1 I avoid groceries. Week 2 I take a vicodin at night to sleep.)

But cooking, unlike writing, makes me curiously happy. I don't hate writing. I'm working on a short story today and there were moments of real pleasure. But every story is a shot at a once in a lifetime moment. Is this story great? Have I really reached? Is there that moment when the page is smarter than I am? It's hard and worrisome. Cooking is immediate gratification. Bob will come home and say happily, "Salmon!" Last time I made salmon, he liked it. I'll use the same marinade today, he'll like it. And next time I make salmon, it will work again.

The thing about writing is that it's a composing art, not a performing art. The performers are the readers. Unlike music, where the vast majority of the people who like music don't make it, most people who like fiction must take the raw score and perform it in their head. Used to be that people sat around in parlors and read to each other. We don't do that. Which is why books on tape are so wonderful because they bring back that pleasure of having writing performed for us.

There are all sorts of performance aspects of fiction that are rarely done anymore but thanks to things like books on tape or the internet, they're coming back.

One of the things that has nearly disappeared in the written word (but not in drama for example where it is a staple of television) is the serial. Years ago a writer took a book she couldn't sell and put it online a chapter at a time and I was rivited. Each week for something like half a year, I went to read the latest installment. Only near the end of the book did I discover that what was carrying me was as much the anticipation as the actual quality of the book. It was a book that turned out to be rather predictable and probably really not particularly publishable. In a different, but still serial performative way, Greg Van Eekhout asked for readers of his blog to give him words and each day he writes a short piece using the day's word. I know the word for tomorrow (pennywhistle) but I have no idea what Greg will do with it. Only that it won't be what I expect. I go every day in to see what he's done.

This blog started out as a kind of serial, although not fictional. It had a plot--would I or wouldn't I get better. (I would like to think that most of the suspense has been blown, although nothing is certain. And there's always the subplot about whether or not I'll leave a prescription in a library book again.) We're wired to like serials, I think and I hope they come back. I'm thinking someone, somewhere should do a podcast serial but I'm not up to doing it right now.

So I'm just a normal kind of girl tonight. Cooking dinner. Watching C.S.I. in a vicodin haze.

Tuesday, May 03, 2005

Thank You

Today I had another minor chemo related problem--it's female and involves itching and lets stop there. But after the face thing, Bob says whenever anything comes up, I have to call the doctor. So I did. The nurse said to call my pharmacy in a couple of hours and they'd have called in a prescription. At 5:30 the pharamcy hadn't gotten the call so I figured the doctor's office would call it in tomorrow. It's hardly an earth shattering health problem, and my oncologist's office is often dealing with minor problems like people who have septicemia or irregular heartbeat or are just basically dying. I'm kind of embarassed to have called, actually.

About 6:30, my phone rings and my doctor says, "Hi, how's your face?" He wanted to know which of the possible treatment options I wanted and to tell me how to deal with associated discomfort. An hour and a half after he's supposedly gone home. (Not that he ever does go home on time.) The nurse had realized she forgot to tell him and called from her car. Only one doctor has ever called me at home before (and that's my GP who is also a truly good doctor and thoughtful guy.) All my life I've fought with the medical system who has done things like prescribe tetracyclene for me when I was on birth control. (There's a word for women who take birth control and tetracyclene at the same time. Mom.) I've given doctors histories they didn't want to hear. I've had a gynecologist at an HMO snarl at me, "You're going to have to relax." Now I have a doctor laughing and saying, "Do many people call you and ask you 'How's your face?'"

Thank you, doctor and nurses.

The pharmacy called me ten minutes later to say that my script was in, and when I went to pick it up, the pharmacist was actually not swamped. Months ago, when I first had neuropathy (nerve pain) and the doctor called in a prescription for pain meds, I went in to pick them up. The wait was forty minutes long, but I was so tired and in pain, I'd have waited all day. I said I'd wait, and I saw her back behind the counter glance up at me. Ten minutes later, they called my name for my pain meds. Tonight she wasn't so busy and I got to say thank you. Thank you pharmacist.

On a really bad day, Greg Feeley called me. I was bad tempered and unhappy and looked like the elephant woman and the minutes were going by like hours. I was in despair but afraid to admit it to myself or anyone else. I was not a good conversationalist. But he chattered and got me through that really bad day. Thank you, Greg.

I know there are more people to thank. Bob, for one. Bob gets thanks and thanks and thanks. But it's so self-indulgent of me to be able to thank you all. You have mattered so much to me. This blog has mattered so much to me.

I watched coverage of the Ironman Hawaii, that insane triathalon where people swim, bike 112 miles on a road that crosses sunbaked lava fields, and then run a marathon. They showed people coming across the finish line--not the winners, just some of the hundreds who complete the race. I started crying. I think I'm like a runner who is getting close to the end but isn't there yet. I keep thinking about when the race is over, but I need to focus on running. I admit, I've been really tired the last couple of days, mentally and physically.

But you guys have been there, talking to me, while you run your own races and live your own complicated lives.

Monday, May 02, 2005

Silence

I follow a number of blogs. A really well-written blog is by Louise, called Bomb in My Belly. Sometimes, what Louise writes about is grief. Sometimes joy. Sometimes its about the really stupid things people say about cancer.

I am relatively silent on a lot of things in my blog. Mortality, especially. I promised my husband and son that I would be okay, and I really don't know what to do about the possibility I might not. Today I read Louise's link to another blog-- Cancer, Baby that CancerBaby's ovarian cancer has recurred. I have a friend who has ovarian cancer and they've told her that it is a chronic disease. She's has three bouts, but she's seeing her kids grow up and doing all those important things. Part of me wants to start rushing in and saying that there are lots of things they can do and they can do more every year and that's all true, but CancerBaby may die.

And I may die. My cancer is in remission, but I have a 30% to 40% chance of relapse. If I relapse, they do a stem cell transplant (a nasty procedure that involves pumping up my own bone marrow cell production to horrendous and painful levels, harvesting the cells, and then giving me massive doses of chemo to kill everything, including my bone marrow. Then they re-introduce my bone marrow and hope it comes back on line.) If I have a relapse, and a stem cell transplant, the chances of success are 50%-50%.

Overall, chances are 75%-85% that I'll live. But I don't talk about the other 15%-25%. In some sense, I expect to live, and so I feel as if I'm trying for unearned sympathy if I talk about mortality. On the other hand, who wants to talk about mortality? I know some people just can't. "Let's not talk about that now," they say. Okay. So we don't. Hodgkins is the good cancer, the survivable cancer. Right up until, for some of us, it isn't. I'm trying to be a survivor. I'm in remission. One chemo to go and then, hopefully, I walk away from Planet Cancer for good. I visit my oncologist for check-ups and make his day better because I'm a good news patient. I say hello to Jeannette and Pam and Tammi and Kelly and all the nurses who saved my life. I don't die for many many years.

PeteyBob

Okay, mostly I've confined this blog to my life with Hodgkins, but I feel compelled to tell everyone that this is my new nephew, PeteyBob. Isn't he cute? He's a Boston Terrier. He's by far and away the cutest of my nephews.

Vanity, Redux

Having spent a few days as the Elephant Woman, with a face distorted enough to stop children (so they could stare or even ask, 'What's wrong with that lady?' although none, thank God, ever did) I am back to pretty much normal. If normal means bald and almost without eyebrows and eyelashes. The funny thing is, I think I look great. I look in the mirror and think, 'Wow, pretty nice looking woman!' Now mind you, my skin is damaged--tiny fine wrinkles--from the bleomycin and it's still faintly pink and a little rough from the infection. But I look in the mirror and feel genuinely attractive.

I guess my self-esteem would benefit from being truly ugly once in awhile.

I took the big leap and I bought my plane tickets for New Mexico. I think I am insane to go. I had chemo on Thursday, and then on Saturday and Sunday I kept thinking to myself, I'll be traveling this time in two weeks. I'll be traveling when I feel like this. I even did some stuff to see how I would handle it. Saturday we went and saw The Hitchhiker's Guide to the Galaxy. Not a plane ride, but then a plane ride isn't a triathalon, right?

I will be traveling, I have decided, doped to the gills on all my medications. By the time I get to Albuquerque on Saturday, I have no doubt I will be blind with exhaustion. And I figure, Sunday, I will be useless to any human being in the world. My husband and sister think I am insane, too. But my sister says she would probably have done the same thing. 'You love it there,' she said.

And I do. I love northern New Mexico in a way I can't find words for. One of the formative experiences of my life was when I was in my twenties and my roommate took me to the Metropolitan Museum of Art. I'd studied a little art history. And one of the paintings that had just spoken to me was Velazquez's Portrait of Juan de Pareja. Who knows why. You take an art history class, you sit in the dark and slides flicker in front of you and sometimes, art infects you. In the Met with my rommate, we rounded a corner and there it was. If asked, I would have said that I thought it was in Toledo, Spain or something. I would have said I would never see it. But there it was. And of course, in person, it is so much more extraordinarily rich. I wanted that painting so much. I ached for it. I didn't want to own it. I couldn't say what I wanted from it. It was as if I wanted to eat it. To have it so completely. I wanted what it did to me to never stop happening.

When I first went to New Mexico, I got off the plane, and Sally Gwylan drove Sean Stewart and me north from Albuquerque through the desert to Santa Fe, and then up into the mountains to Taos. It got dark as we drove, but I could still see, all around me, the bones of the land, the mountains rising so abruptly from the desert like vertebrae. And I had some emotional reaction as atavistic as my reaction to the painting. I stared and I babbled. The next year I dragged my sister there, and the year after, my husband.

So I am going back. I don't care if I have to spend hours in airports feeling like I've been runover. On Sunday, I'll sit in the mountains, and the sky will be that extraordinary color blue. The mountains themselves will ring us like the lip of a huge bowl with the Rio Hondo river cutting down the valley and the air will still smell a little of cold because less than a mile from us, there will still be snow.

About Me

I'm a writer with four novels and more than two dozen short stories published. The best known is probably my novel China Mountain Zhang. A collection of my short stories, called Mothers and Other Monsters, was published by Small Beer Press in July '05.

Chrononaut Log David Moles smart and funny observations. Actually, what I really love about his log is
the design, which fills me with envy.

Pen in Hand I've known Karen for years, but didn't know that in addition to being a writer and a journalist and a volunteer at the local
raptor center, she is also a beautiful illustrator. The most beautiful blog I follow.

Austin Kleon It seems absurd to talk about this blog without including any images, but lets just say it's fun, sharp and graphical.

Not a Journal (Except Now It Is) If this were a blog, it would be about Small Beer and Lady Churchill's Rosebud Wristlet, except it's not
a blog. Except it really is.